Since 27 November 1997 I have lived with type 1 diabetes. Some say it is one of the most complex conditions to self-manage, and as with all long term conditions it significantly affects both physical and mental health.
I had been experiencing all the classic type 1 diabetes symptoms; losing weight rapidly, thirsty, lots of trips to the bathroom, and exhaustion. Lucky for me, I lived in a shared house with my friend who is a nurse and she encouraged me to go to the GP. I can remember the consultation clearly, the GP tested my blood sugar level, jumped up and exclaimed, ‘yes, we have a real diabetic!’
He then sent me off to the hospital where a very kind diabetes specialist nurse took me to a room with a sofa and a box of tissues. I can remember the exact penny dropping moment when I said to her ‘do you mean I am going to have to inject myself with insulin every day for the rest of my life?’ The box of tissues was empty by the time I left the room.
The next thing I did was read as much as I could about the condition, as like most people I didn’t have a clue about type 1 diabetes. Unfortunately, at that time there was not much on the internet, whereas now I can recommend if you want to learn more go straight to Diabetes UK and Type 1 Resources websites.
Living with type 1 diabetes is not easy. In a nutshell my body doesn’t produce the insulin which is needed to change the glucose (sugar) in food into energy so I have to inject that insulin myself. If I didn’t, then a dangerous chemical reaction called Ketosis would occur.
I worked out that I have injected myself over 40,000 times and tested my blood sugar level around the same amount of times. Every time I eat I have to work out the amount of carbohydrate in the food and then match the insulin to it.
The big goal is to keep my blood sugar level as close to ‘normal’ levels as possible because this reduces the risks of the many horrible complications which type 1 diabetes can result in. The other big concern is hypo’s, this is when my blood sugar level drops too low. I have warning signs like feeling hungry, irritable and shaky and sometimes I speak and think less coherently. Because of this I must always have access to sugary food or drinks, my children quite like the fact that I always have sweets in my bag! It’s not always straightforward either as so many other factors affect my blood sugar level including exercise, hormones, stress, alcohol and illness.
Anxiety and depression are highly associated with diabetes. I have experienced both. Whilst the NHS has mostly provided me with excellent diabetes specialist care in terms of the medical side of my condition, I have never been offered any emotional or mental health support. Actually, I don’t ever remember a health care professional asking me how I feel in the context of my diabetes care.
But being diagnosed with a serious long term condition has also given me perspective, a sense of ‘Carpe Diem’ and a need to make the most of every moment. People often ask me how I fit so much in, where do I find the energy and sometimes I tip the balance, but I am driven by that zest for life that comes with a realisation of mortality!
Coping with diabetes has also given me empathy and awareness, and meeting the physical and emotional challenges of adapting has given me strength and resilience. I have met wonderful new friends and have changed my ethos at work to one where I hope my personal experience and passion is helping me to make a positive difference.
I generally take far better care of myself than I did pre-diabetes, drink less, exercise more (although I could do better on both of these accounts), and I am more self and health aware.
In the last 20 years, type 1 diabetes has rarely got in my way. I’ve travelled round the world, climbed the Inca trail, got married and had children, completed an MBA and got out of doing the housework as it gives me hypo’s (milking it I know)!
So whilst it is sometimes hard living with diabetes, (I would like a day off of calculating carbohydrate portions, injecting and monitoring every now and again) and yes, the future is uncertain, (it is a joke in our house that people living with diabetes are at a higher risk of everything on the planet), the negative stuff is not the whole picture. Actually with the disadvantages also comes some precious gifts, especially valuing living and those around you.
I think we tend to view long term conditions as a deficit, always talking about the costs, the complications, etc but I just wanted to share that whilst I wish dearly that I didn’t have type 1 diabetes, since that day, 27 November 1997, my life also changed in a positive way too. The glass is half full!
Image from The Turn-Up Patch.